Saturday, January 30, 2010

January 30, 2007. Three years ago today Hannah was diagnosed with a brain tumor. Some things I can remember like they happened yesterday. This is one of them. Even though Hannah had been throwing up and having stomach aches for about a year (not every day), I went to this MRI with the carefree attitude of a non-cancer parent, never thinking for a moment that anything would come of up. As I sat next to the MRI tech, watching the computer screen the whole time with him, I knew nothing. I remember asking him if he could distinguish anything on the screen because I had no idea what I was looking at. He told me that he had been doing MRI's for 30 years and if there was anything to be seen, he would see it. It must have been a surreal experience for him, seeing that big tumor in her head with me sitting right over his shoulder questioning him. I do remember him bringing out a copy of the dvd to me afterwards handing it to me and telling me "good luck." He knew, he had to have known.

That was a Tuesday. By Tuesday afternoon we were told they "found something" on the MRI, it was a "mass" and we were in the neurosurgeons office being told it could be one of three types of tumor; an astrocytoma which was a non-malignant tumor and required surgery only, medulloblastoma (we all know what that is by now) or a glioblastoma multiform (which is the type of tumor Ted Kennedy had.) The neurosurgeon guessed it was the "middle" option-medulloblastoma-and he was correct.

By Wednesday morning we were checked into the ER at Stony Brook hospital for brain surgery scheduled for Friday. Dave and I were laying in bed that morning at 4am, unable to sleep and decided to finally get up and get going. Dave went to work to get some things in order and I went to the hospital with Hannah. They started an IV (which was much too big for her small veins) and that was the start of Hannah's pain. They were giving her steroids to help drain some of the water pressing on her brain from the tumor. We went right to the ICU awaiting Friday's surgery. Nothing prepares you for seeing your little girl in the recovery room after a 6 hour brain surgery. I wish someone would have prepared us for that. She looked like she was near death, her eyes were swollen, she had blood on her face and head, iv's in her arms, a drain coming of of the back of her brain, but still most of her hair! That surprised me, I thought she would have her whole head shaved, but they only shaved the back, from the middle of her head down.

Hannah went from this:

to this:

My mom took this photo while Hannah was recovering from the brain surgery. Dave and I went that day to Sloan in NYC for a consult with the doctors about her treatment. By the time we got back all Hannah would say over and over was "I want mommy, I want mommy," even though I was right next to her. This is the only photo I have of Hannah during those early days after surgery. It just never occurred to me to even take a photo. You can't see in the photo, but off to the side is a New York Islander who was visiting kids in the ICU. What I see in the photo is a little girl who won't turn her head because her neck hurt from the surgery. We used to prop her head between blankets on both sides to help hold her head up. She also wouldn't move her hand, because of the iv. See her left hand in the photo-it's starting to curl from not using it. Over the next few days, she would lose full use of her left hand and leg.

So many memories, and although so many of them are heart wrenching, some of them are good too. I have been asked if I can breath now, if I feel it's all over. Well, it would be nice. It would just be great to walk away from this world of cancer and not look back. No more MRI's, no more nausea, no more stomach aches or headaches, no more struggles with walking, running, jumping, putting your pants on without falling down, being able to ride your bike without falling off at least once. No more crying over homework because it's too hard and it takes too long, no more feeling inadequate, We don't usually even reveal the fears to ourselves, because then we would have to confront those fears. For now, they are hidden and suppressed. For now we talk about how everything is "great" and Hannah is "doing well" and "all is good." And it is good. In the world of cancer, as a friend once said "we were dealt the lucky card."

Let's hope our hand holds.


Monday, January 18, 2010

Good news, all scans are clear! I called and got the good report from the oncology fellow on call. This is a significant scan, since statistics say that year 2 after end of treatment has the highest rate of recurrence for medullo patients. After 2 years, rate of recurrence goes down. Hannah does have to be scanned for at least 10 years, because there is still a chance of recurrence, not only for medulloblastoma, but also for other tumors and leukemia.

But for now we relish in our good news, AGAIN! This is the first time in nearly 3 years that we haven't had an upcoming clinic visit or scan scheduled. Feels a bit strange. most likely we will go back in March to check in again. After this, Hannah's scans will go to every 6 months (instead of every 4.)

Thank you for all of your prayers and good wishes. Love to you all!


Sunday, January 17, 2010

Hannah and I went in today for her brain and spine MRI. Thanks for all your well wishes! We have never been in on a weekend for an MRI, and now I know we won't go back. Although it was nice and quiet, it wasn't as smooth as we are normally used to.

First we pulled up like we normally do in front of the hospital and valet took our car. Because Hannah is an oncology patient, we don't have to pay for valet (which is nice, because then we can always leave a tip for our driver :)). When we went in, they told us we could not use valet for no cost because it was a weekend, so they couldn't stamp our pass. Ok, no problem we'll pay today.

Next, we went down to MRI. They came out and sent us to a different floor to check in, because there is no secretary in MRI on the weekends. No big deal, only a delay of about 15 minutes. Back down to MRI. It's nice and quiet since it's the weekend, so that was good. We were familiar with the tech, Brian, a nice (and very big) guy who we have seen numerous times. So about an hour into the MRI, they come in to start her IV and get ready for the contrast dye. Brian looks at her arms and decides he doesn't want to try and start the IV. He calls over the other MRI tech and after several minutes of looking, checking, probing and discussing, he decides to try it. Joe was very nice, but couldn't get a vein. Try #1.

Next they call in the radiology resident to see if he could do it. I'm wondering why they would call a radiology resident, whose job it is to read MRI's, but I'm just going with it for the moment. He arrives, and is not the poster child for confidence. He is outside for quite a few minutes, talking with Brian, and I could tell he really didn't want to try the IV. He looked at Hannah, saw that she was a young girl, and looked hesitant. He finally came in and announced "I'll give it a shot." Oh boy. It took him a lllllloooooooooonnnnnnnnnnggggggg time to even prep Hannah for the IV. I should have known when he didn't tie the rubber band properly that he wasn't a good choice. He put in the needle and poked it around her arm for about a full minute before he gave up. Try #2.

What to do next? Well it's a Sunday, so anesthesia isn't around, so that's not an option. I suggested they call one of the nurses from hemonc down, but they said they wouldn't come down. They suggested calling the radiology senior resident, and even though I didn't resist, I wasn't going to approve of that one. Brian ended up calling a nurse down from the pediatric ICU. Hannah and I were taking bets on whether it was going to be a man or woman (since they were all men so far.) We both bet on woman, but they sent both...a man and a woman. They brought down some type of handheld vein finder. The man started the IV in about 10 seconds...Try #3. Hannah has NEVER had to be stuck three times for any IV. Hence, my reservation on the weekend MRI.

I asked Brian if the MRI would be read today, but the radiology attending had already left for the day (at 10:30am) so I put it out of my mind that we would have any results today. I am going to try to contact the fellow on-call tomorrow in oncology and see if they can get a reading. The hospital is closed tomorrow in honor of Martin Luther King, Jr. Day. Otherwise, we won't know until Tuesday. That is the longest we have ever had to wait for MRI results, even the initial MRI, which, by the way was January 30. 2007. I can't believe it's been almost 3 years from initial diagnosis.

Hannah and I went to the traditional celebratory Olive Garden lunch afterwards, which hopefully will be our celebration lunch. I will let you all know as soon as we do!


Sunday, January 10, 2010

Happy New Year everyone! I don't know about all of you, but I haven't been able to write the date yet correctly. Old habits, I guess. Just a brief update tonight. We had a fun New Year's eve here together. The girls stayed up for the big moment, we blew horns and threw lots of junk around the living room-which not only made the dogs a bit crazy, but woke up dad too :)

The new year started off a bit slowly, I was sick for about 5 days, most of that time spent on the couch. My theory is just a regular flu, compounded by this persistent lyme infection. My body just can't keep the lyme at bay while trying to fight off something that I could normally fend off rather easily. It's pretty frustrating, to say the least. I did find some old medicine here, and took that which made a pretty quick difference, but now that is gone, I am already starting to feel the aches return. I'm now on a new mission to find something that rids my body of this. Back to research.

Enough about me though. Hannah was out of school for a couple days last week. She has been complaining about stomach pains and headaches. In true Hannah fashion, this also happened the last time right before her upcoming MRI. She is scheduled to have her full brain and spine MRI this coming Sunday, the 17th one week from today. This one is not so much fun, it is very long (4 MRI's in 1), which lasts about 2 1/2 to 3 hours. We have to get special permission from the supervisor at radiology because they don't usually do these together since it takes so long and most patients can't do it all at one time. But, this isn't the first time, Hannah has done them together for the last 2 years. This is her 2 year MRI, pretty significant in the medulloblastoma world, because the highest rate of recurrence is within the second year after the end of chemo. After this one, they go to every 6 months, yeah!

Hannah has really been doing well. Despite this last week of issues keeping her home from school, and in bed for sometimes the entire day, I am feeling calm about her upcoming scans. I never knew that we could have an MRI on a weekend. After 2 years someone finally told me that scans could be done on Saturdays and Sundays! The only downside is a doctor won't be available to read the scan that day, so we will have to wait until the next day (or possibly Tuesday since Monday is Martin Luther King day.) Talk to me then to see if I am still calm by Tuesday.

Hope everyone has a good week, we'll update again when we have the news about scans-only GOOD news!

p.s. Please remember that if you would rather receive an email when this site is updated, rather than coming here to check in, please enter your email address on the home page, right underneath our address. It works!

p.s.s. Look at the new home page photo-it's Hannah on her 7th birthday, about 6 months before diagnosis. Wow.